Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 05-11-2013, 02:02 PM #1
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Quote:
Originally Posted by Brambledog View Post
Oh it's so hard isn't it?! The constant mental battles on top of the daily physical ones....

Remember that that call could have made by a dumb receptionist or nurse who has given you her interpretation of what she is reading....she may have read that you have CRPS, obviously not known what it is, and on reading that the bone scan was clear, may have just made assumptions. It doesn't necessarily mean that the bone scan report says you don't have CRPS.

I would suggest that you contact your main doctor quickly and ask him to verify the content of the call, and ask if any documentation stating 'no CRPS' has been put on your file, as it could affect your WC if it is not challenged immediately. Doctors tend to move quickest if they know you are determined and confident.

For your own sanity, you have to completely ignore that call and the idiot who made it. If your doctor comfirms the mad lady's view, then as others have said, find yourself another doctor, and write a strongly worded letter of complaint to the clinic. If you have a couple of good links, it might be worth directing them to the current guidelines on CRPS, and suggesting that they educate their staff. It's frightening to think that people suffering from something as vile as CRPS are being consistently let down by those purporting to be medical professionals. They would serve us better if they just declared themselves NOT equipped to treat or diagnose (or comment on) CRPS.

Good luck!

Bram.
Amen, they should lose the arrogance and admit when they are clueless!
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Old 05-13-2013, 07:22 PM #2
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It's just SO awful to hear of all these awful doctors ...

Keep looking until you find a good one - they are out there!!!
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Old 05-13-2013, 08:26 PM #3
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Which doctor would you be seeing at Hopkins? I went there for a few years back around 2006 or so. There was no argument over my diagnosis, even with a previous bone scan. We tried a few blocks even though they failed in the past, changed meds around and yes they did offer the SCS. When I declined they kept me on for pain management, but they WILL try to get your primary care doctor (!!) to take over writing scripts so they don't have to. My PCP sure didn't want to take on that burden.
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